I asked the doctor today if my dad would qualify for hospice since I'm making his medical decisions now, and the doctor said yes because liver failure is terminal unless you get a transplant. I asked my dad if he wanted to go to a nursing home where he would continue treatment or if he wanted to go to a hospice home where he would get pain management and end of life care even if it may be several months. He agreed on the hospice. Half of me thinks I should fight to get him in a nursing home where he can continue to live, but the other half of me can't stand the idea of the rest of his life being in a place he hates fighting an organ failure no one can fix, where he'd eat food he hates, and where his whole life will consist of draining fluid from his legs and abdomen, bland low sodium food, and limited visitation during covid.
I feel like either way I am sealing his fate. If he goes to a nursing home, he could live 2 more years, but at what cost? If he goes to hospice, it'll be less than that, but he'll be more comfortable. But I want my daddy to live.
I am so sad and so lost. I want him to be out of misery, but does that really mean I need to make a decision where he may die sooner than later? Is that right?
Mom was discharged, I simply reinstated her hospice by signing a piece of paper and hospice provided a pump, tubing, and tube feeds...and diapers and dressings and most other supplies.
Mom died of other natural causes, age 90, due to kidney disease -- she was an insulin-dependent diabetic for years and years and years. Her Alzheimer's did not kill her at all. I battled Alzheimer's for 15 years. I never thought other causes would kill her. I always thought her Alzheimer's would have done it.
Now with liver failure, a feeding tube may not a great idea because he probably won't be able to digest it DEPENDING on the degree of liver damage. Once he turns yellow, his stools will become chalky because the bilirubin will no longer be excreted in feces (which makes it brown), but through the kidneys. Bilirubin will clog the kidney tubules and cause kidney failure and death. You will know this is happening when his urine turns more orange color AND urine output decreases considerably. Death will be imminent afterward--within a week.
You are NOT sealing his fate. Natural causes--nobody is going to live forever.
My mom never went in a nursing home, but caring for her was very hard work -- the last nearly 6 years was 100% supervision and in the end I had to diaper her and even make certain she has a bowel movement scheduled every Tues, Thursdays and Sundays because if she did not go, the 4th day she had impaction. that is a living nightmare to go through. But mom was very comfortable and she was surrounded with love and her own surroundings. I do NOT advise people to do home care UNLESS you absolutely know what you are doing. Mom's care and medical management was very challenging to put it mildly.
"...the doctor said yes because liver failure is terminal unless you get a transplant."
No "holistic" anything is going to benefit this man. Based on the profile and lookup of his other "condition", the liver failure is due to alcohol abuse. Again, not a judgment of the dad or his decisions, just pointing out that this is NOT a DIY situation. He is not likely going to qualify for a transplant, even if one was available and compatible.
So long as your dad is considered cognitively capable of making this decision, it IS his decision to make and he made it. The right decision is to abide by his decision.
"I feel like either way I am sealing his fate." YOU are not sealing his fate. Either way the most likely outcome will be the same. The difference is quality of life, not quantity. As you note, you are torn between allowing nature to take it's course with comfort care or sending him off to a NH, where he might be miserable and where you might not be able to visit with him.
Allow him to make that decision, as he has already. He CAN change his mind, but again, it needs to be his decision unless he isn't cognitively capable. It sounds like he understands the difference. None of us want to lose any of our loved ones, but there really isn't anything we can do to change that. We can only try to make their time left comfortable and to be there for them.
As hard and emotional this choice was, know you made the right one. MIL lived in my home with hospice care and did so for almost 2 years. They are there to help our loved ones live the best quality of life they can. They do not look for a cure, but do maintain needed medication ie heart meds,etc. They also assist with pain management, bathing, weekly nurse visits, which can turn into daily visits when the situation calls for it. I am sorry to hear about your dad and what all of you are going through. He made the choice to enter hospice care, support this, it'll make it easier on him. Unfortunately you said that the only cure for him is a transplant, a couple questions for you to think about, would he survive anesthesia and complex surgery, would he be able to deal with the pain afterwards, would he be able to follow dietary and medicine requirements after the transplant. It's easy to second guess what the right decision is for his best interest. Love him, talk with him, spend precious time laughing and celebrating his life. Prayers for your dad and your family.
Your only posts on the forum are complaining and misinforming people about hospice. Troll elsewhere please.
Please rest assured that if you select a hospice plan that is best suited for your needs they will be a blessing in your father’s end of life transitioning.
He will be kept comfortable and have access to a social worker and clergy. You will also have access to the social worker and clergy.
Your father has been approved for hospice. He will not be healed from his medical condition.
Allow him to die with dignity. At this point in time, quality is more important than quantity.
I believe that most people know when the end is near and come to accept it gracefully. No one wishes to suffer more than they have to.
We used hospice services for my brother near the end of his life. All of his needs were met beautifully and he died peacefully without pain.
Wishing you and your father peace during his transition.